March 28, 2016

Eye of the Storm

This week at Support for Special Needs:
Excerpt: 
This week has provided a short respite, a brief interlude in the eye of the hurricane. We've been doing this now for a long time, officially for almost thirteen years but of course a little longer than that. I've learned a lot in that time, usually the hard way, but there's a lesson I keep coming back to. Hold on to the quiet interludes, the ones that feel carefree even if they're simply pauses.

March 21, 2016

A Hard, Correct Answer

Today at Support for Special Needs:
Excerpt: 
When we talk about accessibility and inclusion, those aren't just buzzwords. And they're not just about school, either, although that can be hard to remember sometimes. For people like Schuyler, participating in our society can be shut down as soon as they exit the front door. I worry about Schuyler finding employment, but really, there are a lot of steps between here and there for which there aren't any easy answers. Transportation may be the most straightforward, but it's also pretty daunting. It's easy to forget about the simple act of getting from here to there when we're putting together the list of Things To Keep Us Up Late.

March 14, 2016

Building an Adult

Today at Support for Special Needs:
Excerpt: 
Schuyler is grappling with emotions that are new for her, and with the idea of relationships and a family of her own one day. It's all been so fantastical until now, and her ideas of the kind of person she might be in a relationship with are still very fluid and mostly kept to herself. ("I think I might like girls," she said timidly at one point in the interview. Sorry, grandparents.) Last week, at my aunt's funeral, Schuyler's natural sensitivity and empathy overwhelmed her a little. She wept openly for someone she's essentially never met, because she looked around and saw people she loved crying, and because she was faced with the reality of The End. On the long drive back to Dallas, she asked a lot of questions about death and the people she loved. I could tell she was thinking of her parents in particular and what the world would look like after we're gone. She's catching on that adulthood has some hidden traps, and some deep sorrows.

March 8, 2016

Uncivil Discource

Today at Support for Special Needs:
Excerpt: 
There are a lot of reasons I'm already disgusted and exhausted by this election season. If you want to understand, spend about twenty minutes on Facebook, or a minute and a half watching one of the debates. But perhaps the most disheartening for me right now is the intersection of politics and that old familiar ugliness, our society's propensity for using our most vulnerable population so cheaply and with so little regard for their basic humanity. I made a promise to never give my silent consent to dehumanizing our loved ones by saying nothing in the moment, and I intend to keep it. But it's sucking the life out of me, and I'm beginning to feel like if this is as good as we are, we deserve one of these embarrassments as our President. We deserve to be represented by our own kind.

March 4, 2016

"...the song woke his heart into the darkness and sadness of joy..."

There's a quote that seems to originate from a number of sources, which isn't surprising since it's not terribly original. But it is terribly true.

"You may be done with the past, but the past isn't done with you."

I returned to West Texas this week for that most compelling of homecoming reasons, a funeral. My Aunt Kay died last week. She was married to my father's brother, but she was also my mother's childhood friend. The four of them were the closest of friends, and that closeness applied to all of the cousins as well. We functioned like an immediate family; all of my childhood memories include my cousin/best friend, as well as her cooler-than-cool dad and her impossibly kind and good-hearted mom. When Uncle Tommy died in 1979 and our families drifted apart, something cracked in my family. When my father died eleven years later, that something shattered altogether. I don't think we ever entirely recovered.

Going home this week was about saying goodbye to someone who existed as a central fixture in my childhood, but it also served to try to place that childhood family experience in a larger context. Schuyler went back with me, partly because I thought it was important for her to begin trying to understand the whole end of life process but also because selfishly, I didn't want to go alone. Five and a half hours in the car from Plano to Odessa leaves a lot of time for conversation. When Schuyler asked if she had ever met Kay, I realized with sadness and shame that they had actually only met once, when Schuyler was a baby. It had been so long since I'd seen Kay, or my cousin Pam, either. Pam and I spent our childhoods basically functioning as brother and sister, and I hadn't seen her in fifteen years. Aunt Kay was part of a different life, one in which my family was whole and the future was whatever any of us wanted it to be. My life hasn't turned out like I ever imagined it would back then. Maybe that's true of us all, I don't know.

It happens, I suppose. You put your head down and you live your life, and then one day something terrible happens and you realize that you've let things slip out of your hands that never should have been treated so casually. I loved my Aunt Kay, as I loved and idolized my Uncle Tommy and as I adored my cousin. My memories of them are almost entirely from childhood, from a time so long ago that it feels slightly unreal in my memory, and from a place so unlike anywhere else in the world that it is almost impossible to describe without sounding like I'm making it up. West Texas in the 1970s really does represent a world that was very different from whatever past you probably know.

The time of my childhood is remote. The place, less so. Returning to Odessa is always something of an emotional shake up for me, but now, in the context of returning to embrace not just family but the family and the life of the past, it really is overwhelming. I sometimes turn to music to put it in perspective. Not the popular music of my youth, or the country music that was always present when my father was around. I actually associate home with specific classical pieces. Aaron Copland's celebrated Americana, for instance, like the slow movements of Billy the Kid or Rodeo or even the very end of Appalachian Spring. Big, lonely prairie landscapes in sound, albeit a little cliched.

The music I associate with home isn't about cowboys or even people, which is just as well since my ancestors weren't cowboys or romantic lawmen or heroes of the Alamo. They were the oilfield poor, living in primitive camp houses with faded, peeling paint and cheap screen doors and the occasional snake in the living room. That was my family's world, at least until my father's generation changed course. Uncle Tommy joined the army and moved to New York for a time, probably enough to get a taste for a life different from his own father's. My own father quit the oilfield after watching a friend and coworker burn to death in a horrible accident. My family grew from a hard and dirty industry, but one that hardly any of us still living have any experience with. I have petroleum in my blood, but none under my fingernails. For the first time in my life, I actually find that I regret that, maybe just a little.

Growing up there, I always understood something about Odessa, or any town out in the desert, and it's something of which I'm still very aware. Experiencing that part of the country isn't really about understanding the towns, not even larger ones like Odessa or Midland. West Texas gets under your skin when you drive outside the city limits, and not necessarily all that far, either. As soon as I was old enough to drive, I would sometimes head out to the edge of town, where imported and pampered green gave way to mottled brown. I'd eventually pull off the farm roads and follow a dirt road until I found an open spot where the mesquite bushes had been cleared, usually to accommodate a pumpjack. I'd lay on the hood of my car and listen to the rhythmic wheezing of the well, and I'd watch the sun set in a mess of vivid color and take in the sight of the stars sprawled out across the sky. Sometimes I'd see jackrabbits racing through the brush as I approached, and once I even saw a rattlesnake lazily twisting across the road in front of me. But mostly it was just silence and solitude, bigger than anything I've ever experienced since. The daunting but quiet snows of Michigan, the rolling waves of Long Island Sound, the towering Redwoods of northern California, some of my favorite places in the world, but none could quite compare to the almost oppressive silence of the West Texas desert.

When I'm not there, when I'm living my life in various cities as I have since I left Odessa at eighteen, I still feel the desert of West Texas. When I'm in large groups of people or in busy parts of the city, surrounded by beautiful chaos, part of me is still back home in wind-tossed solitude. Back in my youth with my family, including all those who have slipped away in some way or another, I didn't understand it, I don't think. I didn't really hear the weird, loud silence of West Texas.

My father did, I know that now. He longed to get out into the wilder parts, and we did, often. My father and I had a complicated relationship, as he had with most of our family, and I didn't always fully appreciate trips to the lake or the camping excursions to places like Fort Davis or Big Bend. But I guess I was soaking it in just the same, because I think I'd give just about anything to go back. Not just to the place, but to all of it, with my mom and my dad and his cool older brother who never got to be old in my memories, with my own siblings and my cousin, and with my aunt, to whom I never got to say goodbye. I never got to say goodbye to any of the ones I lost; my family hasn't had a surplus of lingering hospital deaths. Just unexpected phone calls with sad voices and then hurriedly packed suitcases. And memories, played out against that huge desert, always present.

I left the desert as soon as I was old enough, or I guess I thought I did. Maybe those of us who lived there never really get to entirely leave it behind. It speaks to me. Is that strange? West Texas has a voice, and a kind of ancient loneliness. It predates the current fracking boom that has exploded my town with apartments renting for two grand a month but which will probably be occupied by mice in a few years now that the bust is looming. It's a towering sadness that goes back before high school football and my family's departure from the oilfields, back before dusty depression era towns and the first oil strikes, before the US Army and its experimental camels and before the Mexican settlers or the invading Conquistadors before them, before the missionaries came with their god and even before the Mescalero-Apache and Comanche came with theirs. I can imagine the desert how it must have been before humans arrived at all, because it almost certainly wasn't very different at all from now.

That looming sadness comes not from tragedy or hardship, although that desert has certainly known plenty of both, as my own family knows all too well. I think it comes from that very timelessness, that sense like nowhere else in the world I've ever seen, that this world has rolled along for millions of years, and our presence won't matter for more than a blink. A few jackrabbits will hear us and scatter, and maybe our footsteps will startle a few horny toads (if we can even find them anymore), but that's about it.

And yet, those of us who lived there and those who have gone back to that receiving earth are a part of the West Texas desert. I've known so many people who have visited it and who simply don't understand how anyone could feel fondness and that low-burning homesickness for such a hard, barren place. Those of us who grew up there joke about its remoteness and its flatness and the rough people who live there, people with whom we like to pretend we have nothing in common but from whom in reality we are separated only by years and experiences.

I hear it all the time, and I've said it to myself many times over the years.

"How could you ever live in such a place?"

And then that ancient voice whispers, "How could you think you could ever truly leave?"


February 29, 2016

An Undiscovered Country

Today at Support for Special Needs:
Excerpt: 
In addition to her natural empathy, Schuyler holds on to some fantastical ideas about her world, a place in which monsters and and magic and mysticism still play a central part in her thinking. She understands the difference between that world and the real one in which she lives, but she still copes with the hard stuff with a touch of disconnect. This week, she'll face one of the hardest things the world has waiting for her. She'll face grief, the kind that represents the natural order of things, but also a level of pain and finality that will undoubtedly challenge her.

February 22, 2016

Her Own Beautiful Game

Today at Support for Special Needs:
Excerpt: 
I confess, I've worried so much about Schuyler finding her tribe, but in some ways, she's had them around her all along. I think I always envisioned a close group that hung out after school and communicated regularly and folded each other into their daily lives. I realize now that I've been looking at it through neurotypical eyes. Schuyler's tribe was never going to behave like I did with my youthful friends. Their particular obstacles are incredibly complex, and the logistics of something as simple as a trip to the mall to hang out are complicated. In the world of Schuyler's disabled friends, electronic communications and social media have become something of an equalizer, and that's where they navigate much their tricky relationships. They're all finding their way, with tools I never dreamed of at her age. Schuyler's Island of Misfit Toys is part of an archipelago.

February 15, 2016

Valentine

Today at Support for Special Needs:
Excerpt: 
I know there's a boy or a girl out there (probably a boy, judging from her interests so far, but never say never) who will meet Schuyler and will look past her little monster and her childlike nature, who will see what the people who know her already see. He'll recognize the hard work she'll require, but he will also understand how very, very worth it that work will be. He'll know that he's found a girl who is literally like no other in the world, a person who is unique in ways that transcend the simple individuality of every human. He'll see what a perfect friend she can be, and he'll understand that her gigantic whale of a heart is capable of such love and devotion.

February 8, 2016

Anything You Want to Be

Today at Support for Special Needs:
Excerpt: 
As I've written before, I'm a big proponent of overbelieving. I've never been hesitant to encourage Schuyler to reach far beyond her expectations. Time and time again, she has responded by exceeding those expectations. Like Santa Claus, the encouragement that "you can do whatever you want in life, be anything you want to be, as long as you're willing to work for it" is a gentle lie told to very young children. It's one that we as parents understand will be shaped and molded as our kids get older. When you're five, it's entirely feasible that you could be a cowgirl or an astronaut one day. When you're a teenager, that conversation become a lot more real world.

February 2, 2016

Viva Schuyler

Today at Support for Special Needs:
Excerpt: 
This weekend was a big risk. One week after her sixteenth birthday party and the bumps in the road she suffered there, we took Schuyler to Las Vegas to attend a surprise fiftieth birthday party for one of my best friends (and Schuyler's godfather). Last weekend, she was undone by a gathering of her school friends that she basically sees every day, over pizza and games. We followed that up with a trip to Las Vegas, a place that is the very physical manifestation of the concept of overstimulation. It's safe to say that we were concerned.

January 25, 2016

The Price of Happiness

Today at Support for Special Needs:
Excerpt: 
I learn from Schuyler and her gigantic good heart. She teaches me every day, and mostly the thing she tries to impart to me me is simply to lighten up a little. It's a hard lesson for me; at times, I feel like my fatherly life's narrative has been written in worry. But it's the one lesson she never gets tired of giving to me.

January 18, 2016

The Three Anxieties and the Lucky Brain

Today at Support for Special Needs:
Excerpt: 
Aside from the obvious, Schuyler has always had something of a lucky brain. It's pretty seriously affected by her polymicrogyria, but you'd never know it from seeing her. Schuyler's brain is working in ways that are a mystery to everyone, even her doctors. Areas that should be deeply impaired are functioning at high levels. Just being ambulatory is something of a miracle for Schuyler, and she is so much more than just ambulatory. Her enigmatic brain isn't simply doing more than it should. It's doing most of what it should. I hate Schuyler's monster, but God, do I love her brain.

January 4, 2016

Just possible

Today at Support for Special Needs:
Excerpt: 
We were in line at the grocery store (the place where all these kinds of stories seem to take place). When we reached the front, we saw our cashier, a nice, smiling young woman who had a lightweight, active-type model wheelchair parked behind her register. She and Julie chatted as we checked out, and she watched Schuyler very closely as we interacted. (I believe I was being my usual mature self.) We're accustomed to Schuyler being watched; there's a kind of "Uh oh, what's going on here?" moment with people when they realize that things are not quite what they appear with my daughter. But this time, there was no trepidation in her look, only friendly curiosity.

December 28, 2015

A new year, a new opportunity

This week at Support for Special Needs:
Excerpt:
In 2016, we're not just going to be choosing a president. We're going to be establishing a new social narrative, or at the very least engaging in a more vigorous discussion than we've had in a very long time. If we can focus on our commonalities, if we can present a voice that isn't necessarily unified (because I know better than to think that is likely to happen), but at least harmonized, this year could present a real opportunity to create a national conversation about disability rights and our broken social model, a dialogue that effectively addresses the needs of disabled persons. This could be the year that society responds to the needs of this community reasonably and empathetically, rather than with "oh, god, not these people again".

December 23, 2015

Recognition

As an author or a public advocate and speaker, it happens every so often. You'll be in a public place, and someone will approach you, ask if you're Your Name (note: if they actually say "Your Name", give them some personal space), and proceed to tell you how your work has inspired them or reached them in some way. There are a lot of good things that come from writing and speaking on disability, but this is easily one of the very best. You reached someone, and you made a difference. That's a hard feeling to beat.

It happened again this morning. But not to me.

It happened to Schuyler.

We were at the movie theater, on our way out, when a young woman approached her.

"Hi, you're Schuyler, right?"

Schuyler smiled shyly and nodded. The young woman proceeded to tell her how she'd heard Schuyler speak at the Region 10 Service Center over the summer, and was really affected by her presentation. She explained that she's a teacher and works with elementary school kids and assistive technology like Schuyler's. She said Schuyler was an inspiration to her and what she hoped to see from her own students.

(At one point, she quickly turned to me and said, 'Oh, I enjoyed your talk, too." It was really nice of her, but totally unnecessary; I am more than happy for Schuyler to own her moments entirely.)

Schuyler smiled hugely and thanked her, and then just like that, the encounter was over.

Except it wasn't over. It'll never be over, not for Schuyler, and not for me. I've been a tenacious and loudmouthed but wildly imperfect advocate for her. Now it's her turn, and moments like this are going to help define the kind of person and advocate she wants to be.

To hear from a stranger that her words and her example are making a positive difference in the lives of others like herself, "with little monsters of their own", as she puts it? You can attach value to a lot of things in this world, but a moment like that is truly without measure.

As for my own feelings of pride for Schuyler, my own words are entirely inadequate. So I'll just leave it to you to imagine. (Think big.)

December 21, 2015

16

Today is Schuyler's sixteenth birthday. I'm trying to wrap my brain around that, but it's daunting. My little girl is sixteen. Yeah, no, I'm still working on that.

So this is Schuyler at sixteen. She loves music, although most of what she listens to is a mystery to me now. Between what she picks up from her friends at school and her Teen Mix list on Spotify, she'd might as well be receiving transmissions from space as far as I'm concerned. I realize this puts me squarely in the center of curmudgeonly old fart territory, which is fine. Just keep off my goddamn lawn, thanks.

Schuyler occasionally mentions driving, although she doesn't push it too hard. I think she understands that for a number of reasons, including the reality of her past and also very occasionally present seizures, she's not ready. She might be one day, but not today, and not soon. She gets this, and she's not in a hurry to get started.

Like any sixteen year-old, Schuyler is working out who she is, at her own pace. She's experimenting with her look, with her hair color and make-up and other things that are age appropriate. (Her latest thing is asking to shave the sides of her head, which is getting a chilly parental reception; I wouldn't expect that particular look to make its debut any time soon.) She's become a pretty dedicated hat wearer, and complains almost daily about how she's not allowed to wear them to school. She wears her Polymicrogyria Awareness pin on her favorite hat, and she kisses me and says thank you every time she sees me wearing mine, which is pretty much every day.

Schuyler hasn't had a first date yet, although we encourage her as much as we possibly can. She's shy, something she comes by honestly, and she doesn't even remotely understand the rituals of teen community. I'm not sure anyone truly does, but Schuyler REALLY doesn't get it.

People like to make the same dumb jokes about dad not being ready for his little girl to date. And that's fine, because that's our societal narrative. But if I could have any wish for my daughter now, it would probably be for her to find someone who gets her and who wants to unravel the mystery of Schuyler. At sixteen, it doesn't feel like this is imminent, but you just never know, I suppose.


Schuyler is building a peer group, maybe for the first time. It's almost exclusively special needs kids like herself, and she's learning to navigate everyone's differences the same as the rest of us. It's tempting to imagine kids with varied disabilities coming together as a group naturally, and in some ways that's exactly what happens. Outsiders find their own. But there are bumps in the road, and she's learning to deal with those. I think she's doing pretty well.

Schuyler at sixteen is a girl who lives behind electronic screens, which is not particularly unusual for a girl her age. I sometimes worry about that, but those screens are her path to a larger world, for assistive speech tech and social media and direct communication through texting. I'll accept excessive Netflix as the price we're willing to pay for that.

At sixteen, Schuyler loves all things Star Wars. She likes manga and anime (I'm assured that these are different things) and putting on headphones to sing along to her music without reservation, often without awareness of how loudly she's belting it out. Unlike her earlier years, however, she doesn't particularly care when you point it out to her. Schuyler's got to sing. Everyone else needs to deal with that.


She still giggles when she sees a boy she likes. She epitomizes uncool in those moments.

She asks a lot of questions, even though I tell her she has to pay me a dollar if she asks ones I've already answered. (She's running up a tab.)

Schuyler has declared herself an agnostic, saying that she mostly believes in God, but thinks the Jesus story is silly. That hasn't changed in a few years, so I imagine she might just stick with that perspective for a while.

She wants to learn to cook. I'm hopeful that she wants to learn to clean, too, but you know.

She also wants to become a DJ, with the name DJ Space Monkey.

Schuyler still laughs loudly, runs and jumps around vigorously, touches the people she loves without hesitation and sometimes without much in the way of boundaries. She talks during movies in a stage whisper that isn't even remotely quiet. Being with Schuyler is a very physical and not at all subtle experience, something that no doubt comes from so many years of having to employ physicality in her communications. We try to help her adjust to a more polite community around her, but to be honest, it's one of the things about her that I'm the lest interesting in losing as she gets older. Typhoon Schuyler is the merriest of storms.

Most of all, Schuyler still wants to be a teacher. She gravitates towards advocacy in ways that as a parent I never dared to hope for. I'm not sure you can teach a child to be truly empathetic. You can only hold that door open. Schuyler's got the biggest heart in the world. She still wants to help others like herself, people "with little monsters of their own".

At sixteen, Schuyler is still the radiant center of the universe. Well, I can only speak for myself.

The Season of Beauty Found

Today at Support for Special Needs:
Excerpt: 
It's only a few days before Christmas, and even though I'm a dirty heathen, I find myself compelled to reach out to my fellow special needs parents. I understand that it's not necessary an easy or particularly merry time for many of you. I know that in some ways, this might be the very hardest part of the year. There's not much in the world with as much power to isolate us as a seemingly constant reminder that the standard holiday narrative is not our own. Happy and understanding families, smiling untroubled kids, a world filled with peace and love and acceptance, all of these can feel far away to us. The Norman Rockwell scenario fed to us by popular media can sometimes feel like it's winking at us and saying out of the corner of its mouth, "Ah, yes, but not for you."
Happy holidays to you all!

December 14, 2015

Small World

Today at Support for Special Needs:
Excerpt: 
When we can't pass and disappear into the world of the typical, the internet communities we build help us to feel as if in this smaller, more self-selecting world we've assembled, we're part of a neighborhood, and when someone is in trouble, it can sometimes seem like that family lives just down the street, and we were informed by a neighbor walking by. It is, as I said, a fiction, but it's one of the more valuable ones we have.

December 8, 2015

A Simple Season

Today at Support for Special Needs:
Excerpt: 
The world isn't an easy place for kids like Schuyler, but at times like the holidays, it can perhaps be a little more straightforward. I think one reason Schuyler adores this season so much is that for at least a little while, the rules become a little more clear, and a little more fair. It doesn't matter so much if disability makes things harder, because during the season of peace, the people around her perhaps try a little harder to be kind and inclusive. The world in which she lives, one that fascinates her even as it sometimes disappoints, it makes a little more sense at this time of year. And if I'm paying attention, her straightforward love for that grand, rough world begins to make a little more sense to me, too.

November 30, 2015

The Politics of the Low Road

Today at Support for Special Needs:
Excerpt: 
You don't have to be Donald Trump to take a spin on that low road, either. You can be the President of the United States or the Mayor of Chicago, and all your good works on behalf of the disability community can be tarnished by a careless moment or an entrenched vocabulary that is unable to surmount your pride or your bad habits. You can be an educator enjoying the sanctum sanctorum of the teachers' lounge as a safe place to express your frustration. You can be a teenager who might even know better but is afraid to step out of the immature culture of your peers. For that matter, you can be an author and parent advocate who only finds his better humanity very late in the game, destined to spend the rest of his life striving to do penance for years of insensitivity.